最新研究显示：即使处于临床缓解期，克罗恩病患者在工作上受到的影响程度仍高于普通人群
该行动旨在通过推行共决策的理念，助力患者在实现内镜缓解的同时，兼顾疾病管理与人生追求
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新加坡
2025年9月30日 /美通社/ — 强生公司今日宣布在亚太区正式启动”双重人生”行动，旨在提升公众对强化共决策（SDM）重要性的认知，更以这一理念为支撑，助力炎症性肠病（IBD）患者实现持续内镜缓解，让患者在疾病管理与人生的双向维度上握稳”掌控权”，绽放更有质量的生命状态。这行动在亚太地区提供了一系列疾病教育资源。
作为IBD的两种主要类型，克罗恩病（CD）和溃疡性结肠炎（UC）影响着全球约1000万人，且在亚洲的发病率呈增长趋势1,2,3。IBD多发于青少年时期4，常见症状包括腹泻、便血、腹痛等症状5，不仅严重影响患者的学业6、职业发展7和人际关系8，更迫使患者过着表面正常，内心煎熬的”双重生活”。
在全球范围内，大约仅有10%的CD患者能够达到临床持续缓解9，多数UC患者仍主要依赖传统治疗方案10。近期，一项来自亚洲最大规模新诊断CD患者队列研究iCREST-CD的子分析结果显示，在临床缓解的CD患者中，工作时受到影响的患者比例为25.7%，显著高于日本整体人群的20.1%11,12。这表明需要更有效的疾病管理以实现持续深度缓解。
近年来，中国UC患病率正快速攀升，预计2025年将超150万例13。许多患者仍面临诊断延迟、生物制剂可及性有限、疾病认知不足等挑战。但通过早诊早治、扩大治疗选择、加强疾病教育支持等措施，有望帮助更多患者在实现临床缓解（以症状控制为主）的基础上，进一步达到内镜缓解（即结肠镜下无活动性病变）14,15。然而，据相关调查显示，仅不到40%的患者听说过”黏膜愈合” (内镜缓解) 这一概念15,16。
爱在延长炎症性肠病基金会联合创始人、浙江大学医学院附属第二医院消化内科陈焰主任医师强调：”医生与患者之间对治疗目标的认知差异凸显了共决策的必要性。构建互信的医患关系和高效的沟通，不仅是弥合认知差距的关键路径，更能有效推动患者深度参与到治疗决策中，为其追求人生理想提供坚实支撑。”
不仅如此，医患对”缓解”定义的认知差异也会影响治疗预期和结果16。患者往往认为”缓解”就是症状消失了，而医生则会依据结肠镜等检测结果来界定这一概念15。值得注意的是，能通过内镜观察到的缓解状态，不仅与患者更高的生活质量相关，还能降低其手术与住院风险17，并提高持续缓解的可能性18。
研究显示，共决策能够促进医患高效协作，从而改善治疗效果19，但该理念在亚洲地区的应用仍相对有限。据全球数据显示，超过80%的IBD患者和医生认同并支持共决策这一理念19。然而在日本，53%的患者担心自己在就诊时提问过多20。在中国，30%患者对就诊沟通的深度和时长感到不满21。
为改善这一现状，陈焰医师及其团队正依托数字化平台，着力提升中国患者的疾病认知水平与治疗参与度：”长期以来，我们通过数字化工具和社交媒体加强患者教育，让他们以更省时、省力、低成本的方式获取关键信息，增强治疗信心。”
在IBD领域深耕创新三十余载的坚实基础上，强生正式启动”双重人生”行动，旨在携手IBD患者社群，共促疾病诊疗模式的深度变革。强生创新医疗亚太区商业战略副总裁Earl Dancel表示：”我们致力于弥合诊疗与医患沟通上的差距，帮助患者在有效管理疾病的同时，重新找回生活的主动权、追寻人生梦想。当患者掌握正确信息并积极参与治疗时，内镜缓解就不仅仅是一种可能——它更成为实现双重人生的重要途经，让健康与理想生活双向同行。”
该公益行动已在亚太地区推出了系列活动，其中包括#我的双重人生 医患共决策赋能视频，助力患者提升疾病管理主动权; 即将在中国上线的#YouSeeUC科普项目，旨在打破患者对缓解认知的误区并推行共决策理念；在日本推出的由医疗专家参与访谈的疾病教育内容，为IBD患者提供平衡工作与健康的专业指导；在新加坡通过媒体分享患者真实故事，传递疾病管理经验。
关于
“
双重人生
“
行动
“双重人生”行动是一项新型患者赋能倡议，旨在通过提供科学的共决策（SDM）工具，弥合医患在IBD治疗目标认知上的差距。该行动与胃肠病学家、倡导团体及媒体合作，致力于通过共决策实现内镜缓解，助力患者同时掌控疾病管理与人生追求。
关于炎症性肠病
炎症性肠病（IBD）是一类慢性非特异性消化道炎症性疾病，主要包括克罗恩病和溃疡性结肠炎1。常见症状包括腹泻、便血、体重减轻、口腔溃疡及腹痛5。自21世纪以来，西方国家IBD发病率趋于稳定，而亚洲地区发病率持续攀升3。IBD多发于青少年时期4，对患者的学业6、职业发展7及人际关系8均构成影响。
目前IBD尚无法根治，主要治疗目标是实现并维持缓解。IBD缓解包含以下层面：症状控制表现为活动性症状消失；内镜缓解指结肠镜下未见活动性病变；组织学缓解则要求组织层面无活动性炎症15。
关于强生
在强生，我们坚信健康就是一切。凭借在医疗健康领域的创新实力，我们致力于打造一个全新的世界。在这里，复杂疾病能够得到预防、诊疗和治愈，治疗方法更智能、更微创、更个性化。基于我们在医疗科技和创新制药两方面得天独厚的综合实力，我们在整个医疗健康行业不断创新突破，勇毅前行，为人类健康事业的发展带来意义深远的影响。
更多信息请访问https://www.jnj.com/。
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